The STAR Act Still Needs Your Help

Monthly Archives: April 2016

200 and Counting: The STAR Act Gets Three More Sponsors, but STILL Needs YOUR Help!

Children fighting childhood cancer never give up! Through the pain of illness, the discomfort of harsh treatment, and the boredom of long hospital stays, they fight with courage and strength and intensity. And these brave children need us to fight on their behalf with just as much courage and intensity. That is why we are asking you, once again, to help us fight to make the Childhood Cancer STAR Act (Survivorship, Treatment, Access and Research (H.R. 3381/S. 1883) into law. Just yesterday (April 28, 2016), three more cosponsors added their names onto this critical bill, bringing the total number of cosponsors up to 200 in the House of Representatives alone. This means that since our last update in early November, more than 100 Representatives have recognized the critical difference this legislation can make in the ongoing fight against childhood cancer.

This is fantastic news, of course, because it means that support for this important bill is continuing to grow and gain momentum, and we are so close to our goal: we need about two dozen more cosponsors to move this bill through committee and onto a vote in the House of Representatives. Here at the ACCO, we continue to work daily to keep the momentum building, to remind all members of Congress of the critical difference this potential legislation can make for children fighting cancer. Yet we need your help; our voice alone is not enough. We ask you to help us encourage all members of Congress to support this bill and help make it law.

I Want to Help Support the STAR Act: What Can I Do?

We have identified Representatives from 17 states who have not yet added their names to the STAR Act. If you are from one of these 17 states:

California

Florida

Illinois

Indiana

Iowa

Kentucky

Louisiana

Michigan

Missouri

New Jersey

North Carolina

Ohio

Oregon

Pennsylvania

Texas

Virginia

West Virginia

We ask you to contact your Representative and ask them to support this bill. Below is a list of specific Representatives we would like to target, along with their Twitter handles. Tweet them today:

@(insert twitter handle) Pls support kids with cancer. Co-sign HR3381 ‪#‎STARAct for ‪#‎ChildhoodCancer. It will make a difference!

Not on Twitter? That’s ok! Send them an email, or even write a letter. Call their office directly. Or do all these things! Help us:

Remind these Representatives that the STAR Act gives hope to all children fighting cancer today, to childhood cancer survivors who continue to suffer long-term health effects from today’s toxic treatments, and to the 1 in 285 children who will be diagnosed with cancer every year.

Inform them that the Star Act is an important step in closing the funding gap that threatens to undermine the development of much-needed advances in treatment protocols for childhood cancer.

Ask them for their support in ensuring adequate funding for critical research programs and clinical trials supported through the NCI’s Children’s Oncology Group, where nearly all recent gains in the fight against childhood cancer have been made.

The ACCO helped write the STAR Act to ensure the future of ongoing efforts to develop new, more effective, less toxic treatment methods for all forms of childhood cancer. We will not give up the fight to make the STAR Act into law and bring hope to childhood cancer warriors today and tomorrow, and we hope you won’t give up either…

…Because Kids Can’t Fight Cancer Alone!®

Representatives to Target:

Fred Upton (R-MI) @RepFredUpton

Joe Pitts (R-PA) @RepJoePitts

Brett Guthrie (R-KY) @brettguthrie

Ed Whitfield (R-KY) @RepEdWhitfield

John Shimkus (R-IL) @RepShimkus

Michael Burgess (R-TX) @michaelcburgess

Morgan Griffith (R-VA) @RepMGriffith

Gus Bilirakis (R-FL) @RepGusBilirakis

Billy Long (R-MO) @USRepLong

Renee Ellmers (R-NC) @RepReneeEllmers

Larry Bucshon (R-IN) @RepLarryBucshon

Greg Walden (R-OR) @repgregwalden

Steve Scalise (R-LA) @SteveScalise

Bob Latta (R-OH) @boblatta

Pete Olson (R-TX) @RepPeteOlson

David McKinley (R-WV) @RepMcKinley

Adam Kinzinger (R-IL) @RepKinzinger

Bill Johnson (R-OH) @RepBillJohnson

Richard Hudson (R-NC) @RepRichHudson

Frank Pallone (D-NJ) @FrankPallone

Gene Green (D-TX) @RepGeneGreen

Kurt Schrader (D-OR) @RepSchrader

Jerry McNerney (D-CA) @RepMcNerney

Dave Loebsack (D-IA) @daveloebsack

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time. Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

Mother’s Day (May 8th, 2016) is almost here and ACCO’s supporters can join CouponCabin and save up to 50% on ‪#‎MothersDay‬ flowers and gifts at 1-800-Flowers.com! Not only will you earn 3% cash back from CouponCabin, but CouponCabin will also automatically donate 20% of the earned cash back to the ACCO.

We are also very excited to share that CouponCabin has landed another special offer for ACCO supporters! In honor of the iTunes debut of ‪#‎Child4Child‬‘s stirring new song, “‪#‎WeAreOne‬“, CouponCabin has found a coupon for 3% to 5% off iTunes gift cards at Raise.com.

While we hope the American Childhood Cancer Organization and its supporters enjoy this holiday special, CouponCabin is always striving to make their charity partnerships thrive. If there are any offers that you would like to see on CouponCabin.com in the future, please share them with us! CouponCabin will do their best to show the entire ACCO community that they truly care about our supporters. Thank you!

“Reason this person is a Gold Ribbon Hero: Without childhood cancer even affecting him personally, Krish has made it a point to help getting the word out by all means possible. He and his fiance founded the 90 climbs in 100 days on Stone Mountain, always runs marathons and other runs, paints portraits for kids with cancer, brings food to families and the hospital and much more. He even made an engagement video with children with cancer convincing her to marry him. Both actually are a wonderful couple for all that they do.” – Chelsie W

“Reason this person is a Gold Ribbon Hero: Gavin was diagnosed with brain cancer just after his 5th birthday. He lost his ability to swallow, talk, walk and pretty much partake in every activity a normal 5 year old boy enjoys doing. After removing 40% of the tumor, the doctors were unsure if Gavin would ever regain functional abilities again. It has been two years since Gavin’s diagnosis and since then, Gavin has regained the ability to talk, walk and so much more. He has that kind of contagious smile where someone having the worst day could look up at him and instantly feel hope. His unrelenting drive and determination to defy the doctor’s expectations is truly inspiring. It has been two years, and while Gavin still has a long fight ahead of him, each and every doctor’s visit brings more positive news. Gavin is a Gold Ribbon Hero because he sees light in every situation no matter how small the flame or how great the darkness.” – Cassandra H

We had a top notch volunteer session this past Saturday! I can’t believe that every session we host I am able to report it is an even better group than the last, but we really lucked out with this bunch!

We had 20 volunteers show up to do some great work; we assembled 500 Medical Play Kits; Unboxed 500 copies of our Palliative Care book and inserted our bookmarks and re-boxed them for future shipments; & stocked our hallway shelves full of books and materials.

Of the 20 volunteers about half of them were members of MD and DC chapters of the Americorps. These participants and everyone else alike had an incredibly fulfilling experience at the activity and we are extremely grateful for their assistance.

Thank You to All Our Volunteers! We couldn’t do it with out you.

Kathryn Murphy

Partnerships and Admin Manager

American Childhood Cancer Organization

Event Photos

H.Res. 586, DIPG Awareness Week

May is National Brain Tumor Awareness Month, and with this important awareness event comes the opportunity to shine a critical spotlight on one of the most deadly forms of childhood cancer: Diffuse Intrinsic Pontine Glioma (DIPG). Introduced in January with bi-partisan support, House Resolution 586 calls for the fourth week of May to be designated DIPG Awareness Week. As spring advances and May draws nearer, we need your help to ensure that this important legislation passes through Congress immediately!

In order to become law, H.Res. 586 requires only a simple majority vote in the House of Representatives; just one simple vote is all it will take to help bring nation-wide attention to this devastating illness. But before it can get to the House of Representatives, it must pass through the Committee on Energy and Commerce. And it needs your support to get more sponsors before it can pass through this committee.

How can you help?

On or before April 20, we encourage you to call your Representative(s) and encourage them to support H.Res. 586! Our friends at the Michael Mosier Defeat DIPG Foundation have provided some helpful talking points to use when promoting support for DIPG Awareness Week:

• “My name is ______. I am a constituent of Representative _______. • I am calling to urge Representative ______ to support House Res. 586, which designates the fourth week in May as “DIPG Awareness Week.” • DIPG (Diffuse Instrinsic Pontine Glioma) is the leading cause of childhood death due to brain tumors. • The five-year survival rate is less than one percent. This is one of the deadliest childhood cancers out there. • Between 200 and 400 children in the United States are affected by this disease each year. • We need better research to understand DIPG and develop effective treatments and supporting House Res. 586 is a great start for Congress to demonstrate its support. • House Res. 586 was introduced in January and we want to make sure that it can pass before May, which is Brain Tumor Awareness month. • We need the support of Representative ______ to make that happen and we thank the Congressman/Congresswoman for his/her support. House Res. 586 is currently pending before the Energy and Commerce Committee. • Is this something you think the Congressman/Congresswoman can support? Families like ours would be grateful. • For more information on DIPG, you should visit: www. ______. • Thank you.

What is DIPG?

Diffuse Intrinsic Pontine Glioma (DIPG) remains one of the deadliest forms of childhood cancer, with a long-term survival rate of less than 1%. An especially aggressive type of cancerous tumor, DIPG grows in an area of the brain stem known as the pons, which is responsible for many critical bodily functions like heartbeat, breathing, swallowing, eyesight, and balance. As it grows, it puts increasing pressure on the nerves controlling the pons and the essential functions it regulates, quickly interfering with almost all normal functions of the body. Symptoms of DIPG include double vision, reduced eye movement, facial weakness, and problems walking, speaking, chewing, and swallowing. Eventually, the tumor will begin to compromise the body’s ability to breathe and regulate heartbeat. Unfortunately, the average lifespan after diagnosis with DIPG is only nine short months.

What Will H.Res 586 Do?

The goal of H.Res. 586 is to bring national awareness to the deadly threat posed by this particular form of childhood cancer, which presents an on-going challenge to researchers and oncologists alike. It calls for Congress to:

Designate the fourth week of May as DIPG Awareness Week

Encourage the citizens of the United States to learn more about DIPG and other pediatric brain cancers

Support the expansion of research efforts into understanding and treating DIPG, as well as providing effective care for children with DIPG

Encourage the National Cancer Institute and other organizations directing research funding to consider current mortality rates and years of life lost when considering research grant applications

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time. Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer, on the ACCO in general, or to order resources for you or your child, please visit our website at www.acco.org.

REGISTRATION REMINDER!

CHILDHOOD CANCER ACTION DAYS

WASHINGTON, D.C.

Join Us in DC on May 16-17!

There’s still time to make plans to join the American Childhood Cancer Organization and the Alliance for Childhood Cancer for the 5th Annual Childhood Cancer Action Days. This two-day event in Washington brings our community together to advocate for important childhood cancer issues currently before Congress.

will be at a critical point in the legislative process. Sharing your story in Washington this spring will help us tip the scales toward securing passage of this historic, bipartisan legislation.

Schedule of Events

Monday, May 16th — Issues and Advocacy Training

Location: Holiday Inn Capitol Hill

9am: Registration & Breakfast

10am – 11:30am: New Advocates Training

12pm – 5:00pm: Mandatory Issues & Advocacy Training, Lunch Provided

Tuesday, May 17th – Capitol Hill Meetings

7:30am – 9:00am: Kick-Off Breakfast

9am – 5pm: Pre-arranged Meetings with Members of Congress and Staff

Book Your Hotel Room by April 15!

A block of rooms has been reserved at the Holiday Inn Washington Capitol at 550 C Street, SW, which is also the training location. Rooms are available at the block rate of $259 on a first-come, first-served basis. (Eligible hotel dates: May 15, May 16, May 17)

Call 877-572-6951 or visit this link and use group code CC8 to book your room. The deadline to make your hotel reservation at this group rate is April 15th.

Can’t Attend?

A strong showing of advocates at Action Days 2016 is more crucial than ever, as we anticipate the Childhood Cancer STAR Act will be at a critical point in the legislative process.

But if you can’t join us, you can still help us make this event a big success. Here’s how:

#StepUp online: Follow the online social media campaign in the days leading up to and during Action Day to participate from home. VisitStepUpforChildhoodCancer.com and watch on social media for the gold #StepUp campaign logo to signal the campaign’s kick-off.

The American Childhood Cancer Organization is a 501(c)(3) public charity, whose programs and services are funded entirely by private donations, foundation grants, and corporate contributions.
IRS Tax ID 52-1071826 All donations are tax-deductible as allowed by law.
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